Centre for Applied Dementia Studies, Faculty of Health Studies, University of Bradford, Bradford, UK.
Section of Patient Centred Outcome Research, Leeds Institute of Cancer and Pathology, University of Leeds, Leeds, UK.
Patient. 2019 Feb;12(1):125-136. doi: 10.1007/s40271-018-0334-4.
This paper describes the development of an item pool for a needs-based self-report outcome measure of the impact of caring for a relative, friend or neighbour with dementia on carer quality of life. The aims are to give a detailed account of the steps involved and describe the resulting item pool.
Seven steps were followed: generation of an initial item set drawing on 42 needs-led interviews with carers; a content and face validity check; assessment of psychometric potential; testing of response formats; pre-testing through cognitive interviews with 22 carers; administration rehearsal with two carers; and final review.
An initial set of 99 items was refined to a pool of 70 to be answered using a binary response format. Items were excluded due to overlap with others, ceiling effects, ambiguity, dependency on function of the person with dementia or two-part phrasing. Items retained covered a breadth of areas of impact of caring and were understandable and acceptable to respondents.
The resulting dementia carer-specific item pool reflects the accounts of a diverse sample of those who provide care for a person with dementia, allowing them to define the nature of the impact on their lives and resulting in a valid, acceptable set of items.
本文描述了一个基于需求的、针对照顾痴呆症患者的亲属、朋友或邻居对照顾者生活质量影响的自我报告结果测量的项目池的开发。目的是详细说明所涉及的步骤，并描述由此产生的项目池。
遵循了七个步骤：从 42 名有需求的照顾者的访谈中生成初始项目集；内容和表面有效性检查；心理测量学潜力评估；回答格式测试；通过 22 名照顾者的认知访谈进行预测试；与两名照顾者进行管理排练；以及最终审查。
最初的 99 个项目集被精简为 70 个项目集，使用二进制回答格式进行回答。由于与其他项目重叠、天花板效应、歧义、依赖于痴呆症患者的功能或两部分措辞，一些项目被排除在外。保留的项目涵盖了照顾的广泛影响领域，并且对受访者来说是可理解和可接受的。
由此产生的专门针对痴呆症照顾者的项目池反映了多样化的照顾者群体的描述，使他们能够定义对他们生活的影响的性质，并产生了一套有效、可接受的项目。
